In the limelight

The photo of the three of us provided for the brochure.

Well over a year ago we were asked by Autism Victoria if we would like as a family to be keynote speakers at the Victorian Autism Conference 2012. Mark, Jonathan and I would all speak, and Jonathan would play the piano. It was a great opportunity, and we took it. Though we are used to speaking in front of groups of people, this was our first gig of any size. Jonathan loves to travel and he loves an audience, so he was totally on board with it all. I too love an audience, so I was happy. Poor Mark was a little less thrilled with the opportunity, but I knew he would do just fine. And he did.

We have just returned from our holiday that we took after the conference. What with earthquakes and redundancies, this has been a challenging year, so it was good to pause and take our breath among family and wonderful scenery.

When we arrived and saw our photos and blurb in the programme along with big names like Tony Attwood and Carol Gray we wondered if we were a little out of our depth. However we also knew that we had magic formula of Jonathan’s angelic playing and endearing personality to win over the audience.

Jonathan (who has nerves of steel) opened our presentation by introducing himself and then Mark and I also introduced ourselves and talked about how we found out that Jonathan was blind, and then autistic. To give an idea of our whole family, we showed a clip of William introducing himself. Jonathan then played his virtuoso arrangement of “Swanney River”. In the background was a slideshow photos of Jonathan at the piano, going backward through time to finish with video of him twirling happily at the piano at the age of three.

We need balance in our lives, just as music needs balance.

We spoke about the need for balance in our life as a family with special needs. This included the balance between the needs of the family as a whole and the individuals. Each of us talked about having Jonathan stay away from home and giving the the rest of us a break. Jonathan played a peaceful Gymnopedie by Satie, accompanied by pictures of the family.

The next point of balance was between providing security for Jonathan, and encouraging him to try new things. The culmination of these efforts were Jonathan’s gaining of the Gold Duke of Edinburgh Award, and our journey to New York to visit the Sesame Street studio.

After “The Battle Hymn of the Republic” and photos of his adventures, we talked about the balance between helping Jonathan fit in in the ordinary world, and celebrating him for who he is. Jonathan’s final piece was an Australian Medley of six tunes, beginning with Waltzing Matilda and closing with “Advance Australia Fair”.

It is fair to say that it went well. We didn’t get many questions from the large group, but many individuals and couples talked to us afterwards and said how our presentation had helped them, and touched their hearts. There will be a copy of the presentation available in mid-September if anyone wishes to buy the DVD.

We learned a great deal from the experience. We worked together well as a team. (Mark and I have a joke that we are just Jonathan’s staff – looking after his physical needs!) We were privileged to be able to share some of what we have learned over the last 23 years. Most of all I feel it was a gift to be able to help some other families to see that there is light at the end of the tunnel. There is no doubt that at times I thought the trials of raising Jonathan would never end, and it all seemed too hard. But now we are having these wonderful experiences that connect us with families whose challenges make our own seem minor.

Mark and I also attended several of the other sessions when possible and learned a great deal from the presenters. We felt rather guilty at times at the things we had failed to do as parents. I think we will include that if we are invited again to tell our story.

Nicola and Jonathan appear on ABC News Breakfast

The highlight of the trip for Jonathan was appearing live with Tony Attwood on ABC News Breakfast, hosted by Karina Carvalho and Michael Rowland. Jonathan loves television, and though we have appeared several times, we had not done live before. He did really well, even correcting Mike when he got Jonathan’s age incorrect. I managed to lose track of the question in the middle of my answer, but it didn’t really matter.

There is a possibility that we will be asked to speak at another conference. The parents who spoke to us afterwards are keen for a return appearance. I’m glad we didn’t realise how little we knew when we accepted to speak in Melbourne. We know very little about Autistic Spectrum Disorder. I don’t think we have any right to give advice to anyone about how they should raise their child with or without special needs. But we do know our own story. We do know that it was very difficult at times, and there were times when we would very much have preferred to be ordinary. We also know that we like where we are at present. We still have many things to work through, not the least being getting Jonathan to live independent of us for at least some of the time. (We actually like being his servants.) But our life is ok, and I think that is a message that many parents are greatly relieved to hear.

Uncertainty and order

People generally don’t like uncertainty. Weather forecasts, hurricane warnings and geological models exist because of uncertainty. People eat at McDonalds. Horoscopes endure.   Gamblers have a love-hate relationship with uncertainty. The insurance industry exists to lessen the financial penalties of uncertainty. Mathematical models are developed to try to take uncertainty into account. We all want to have some idea of what is going to happen. It is about control. I’m writing a post in my other blog about the mathematical and personal aspects of uncertainty.

Jonathan on his way to sports day at Mairehau High School.

One of the more obvious aspects of Autistic Spectrum Disorder is the need for order. Jonathan has always liked things to happen when they are supposed to happen, for as long as they are supposed to happen, and with plenty of warning. For a blind child, needing order serves some very important functions. Fortunately (and possibly this is no coincidence), we have had a fairly ordered and predictable lifestyle as a family. He would eat his breakfast at the same time everyday and have a bath on certain days. I think part of his love for television is that everything happens when it is supposed to, and for exactly the correct amount of time. Jonathan preferred secondary school, with set times for certain subjects, to the more freeflow approach of primary school where he never knew when this particular activity he was enduring would end, and another begin. Jonathan ate the same food every day for about eight years, and it really isn’t a lot different now. One of my great achievements in life was getting him to be able to eat at McDonalds without taking a lunchbox. (More on that in a later post)

The other day in church one of the speakers was going over time. Jonathan leaned over and asked me, “Doesn’t he have a watch?” There was a clock in plain view, but the speaker was oblivious. When Jonathan was asked to speak for seven minutes, he wrote and practised his talk so that it was seven minutes. We needed a musical piece about three minutes long. Jonathan produced an arrangement exactly three minutes long (instantaneously). When Jonathan is in the class, it does not go over time without comment. Jonathan knows exactly when things should happen, such as the days the rubbish bins go out, when Mark has meetings, and if the washing needs to be brought in. It used to be that if he didn’t hear the noise of dinner being made at 5pm he would come out and ask me, “Shouldn’t you be in the kitchen?”. I chose to see it as endearing, rather than annoying.

I’ve tried to imagine what life was like for Jonathan as a baby and young child. Everything happened suddenly for him. Because he was blind, he didn’t see people arriving and leaving, but rather they were “here” or “not here”. His life was a series of discrete events, rather than a continuous stream.There were no visual cues, such as seeing people collect up the swimming togs before heading out to the pool. For this reason we learned to tell him what was happening. Now he uses aural cues to the extent that he often has a better idea than we do of what is happening.

In all things balance is important and we have tried to balance making his (and our) lives comfortable by keeping things ordered, while at the same time pushing at the boundaries and helping him to cope with the unexpected. It is easier to encourage new things when there is a base of security from which to work. We learned to warn him ahead of time if things might be less structured. We learned that sometimes it just wouldn’t work – that a surprise activity would be met with such opposition that it was impossible to proceed. We put time limits on things so that he would know when a possible ordeal would be over. Jonathan trained us pretty well really.

Jonathan preparing to play to the cast of Sesame Street

Jonathan preparing to play to the cast of Sesame Street

So it is interesting that Jonathan likes to travel. We were fortunate to be able to visit New York and the Sesame Street studios in (I’ll just check my dates with Jonathan) October 2009, when Jonathan was twenty. You don’t get a lot more uncertainty than in a foreign country. But Jonathan was fine. I think he decided that the end justified the means. We didn’t push him too far, allowing him the odd day at home watching cable TV. He loved the US food, where you can have three side dishes without a single vegetable. He loved the subway instruction, “Stand clear of the closing doors please” at every stop. He didn’t even mind the long haul flight from Auckland to Los Angeles. It was night time so he slept. Then he ate breakfast, went to the toilet and we were in America. Would that I could do that!

I adore Jonathan. I love his love for order. He makes me laugh everyday. He is a quiet orderly presence in our home, keeping things ticking over in an timely fashion. I understand him now, and know how to help him cope with the unexpected. I know it used to be very challenging, but it is hard to recall the details. I think there is a rosy glow descending over my memories of his childhood, where spontaneity was close to impossible. But I think that’s the way it is supposed to be.

Many good ways

Jonathan, at about 2 years old, dancing in the kitchen

Raising children is pretty tricky really. Despite wanting to be a mother all my life, when I managed to produce our first child, William, I really had no idea what to do with him. Penelope Leach became my new best friend as we struggled with sleeping, feeding and crying. (and looking after the baby). I liked that she didn’t make the baby the enemy that required beating into submission, or at least the occasional truce. We learned as we went. I’ve heard it said that “The first child, like the first waffle” should be thrown away.” Though I would hesitate to throw WIlliam away, and my husband, a first born, is a pretty acceptable human being, I understand the sentiment. As new parents we were certainly making it up as we went along.

Consequently I felt a little less anxious about raising a second child. We’d been through it once, and with WIlliam’s health problems had experienced a range of issues. William was two years old, and walking, talking and pretty fun to be with. Surely a second child would be more straight-forward.

Silly me.

Jonathan’s delivery was worse that William’s (which had been no picnic), as he decided to come face first. But he didn’t need an incubator, and his face recovered quickly. He always had a beautifully shaped head. And, joy of joys, he didn’t have excema or any allergies. He fed well and was gorgeous. His eyes did some funny things, but we figured/hoped that was just being newborn. The first six weeks were pretty idyllic really.

How we found out he was blind is a story for another day. We will now fast-forward a few months. We are starting to come to terms with having a child out of the ordinary. But all the rules have changed. Blind babies do things differently. And being the parent of a blind child requires some extra skills and seems to require super-powers. I search through library books and try to find out what we need to do to parent our Jonathan. It is a daunting and worrisome time.

Then one day I am in the University of Otago library, in among the books on parenting. I find one produced by the magazine, Exceptional Parent. I open it up and start reading and find the sentence that changes my life: “There are many good ways to raise children”.

There are many good ways to raise children. That is it. There are many wrong things to do, but there isn’t one good thing that we have to find out. If I do things differently from someone else, we can both be right. I am freed from the need to find the one right way to raise my sons. I would never say that all we have done and continue to do is the right way for anyone else. But I do know that most of the time we did the best we could under the circumstances. Given the time again, there are things we did that I wouldn’t do, and things left undone that I would attend to. But mostly it was ok. We were not the perfect parents to William and Jonathan, but neither were they perfect children. But as a family I think we have done ok.

Jonathan introduces himself

Jonathan goes to the gym three times a week.

(At the beginning of the school year in February Jonathan started a course at CPIT. He sent this email to his teacher introducing himself.)

My name is Jonathan Petty and I’m blind which means I can’t see with my eyes. I read and write using braille and I use a computer called Braille Note and a Desktop Computer called Jaws and they both talk.  I go to the Gym two or three times a week which is located at Burwood Hospital. When I’m at home I like to listen to any kind of TV programmes including classics, children’s programmes and (one of my personal favourites) game shows, because its fun and its for everybody to enjoy (young and older like).

Sometimes my mum Nicola or my dad Mark go to the Canterbury Public Library which is now re-opened because of an earthquake we had last year. But when places like the Library is re-opened there are still things that needs cleaning up from the inside. But mainly the reason why I like going to the Canterbury Public Library is because there are something that you can’t borrow, but you can read it there anyway. And its called Listeners. And its not the articles you can find, but it also includes the TV guide. And that’s what I like about Listeners, because it has past programmes that maybe you remembered watching from along time ago. Like Its in the Bag, Krypton Factor, Country Calendar and course Sesame Street.

And speaking of Television I was on there a few time. In 2007 my first TV appearance was on 60 Minutes (NZ), then one year later I was on New Zealand’s Got Talent. And mostly I made a few appearances on the program that’s made especially for disability people like me called Attitude which is on Sunday Mornings on TV One. The first one that I was on was just a 7 minute segment in 2008, then I played the Piano for the Attitude Awards both for 2008 and 2009. By the way the piano is an instrument I play. Then in October 2009 my mum, dad and I and the Attitude crew went to New York to meet some of the characters from one of my favorite programmes which was Sesame Street. And that was my dream, because Sesame Street was 40 years old then and I wanted to congratulate them. And believe it or not the people of Sesame Street kindly recorded us as part of the program, but only the beginning part which is when my mum and dad and I came past a couple of Sesame Street characters named Elmo and Telly and they said hi to me and they were playing basketball. And speaking of Sesame Street it came back to New Zealand early this year (if you didn’t know that). So if you want to find the ones that had me on I’m on episode 4219.

Never Ordinary

As a child I liked to be different. Ordinary was dull. I was really happy to come from a family of multiple surnames, when that was far from the norm. (My mother was quick to tell people she had been widowed, rather than divorced). I could say I had four grandmothers, through the various permutations. In my eyes it stopped me from being ordinary.

In 1989 I gave birth to Jonathan. It was a challenging delivery but at the end we were so happy he seemed fine. In some ways he really was. But he sure as heck wasn’t ordinary. And if our family was ever ordinary (which I doubt), it stopped being ordinary that day.

In our family we use the word “ordinary” for people who don’t have special needs. We prefer it to “normal”. Sometimes we have wished that our life were a little more ordinary,when the challenges of raising our children became overwhelming. But it isn’t.

This blog is about our life with Jonathan. I could call it “living with an alien”, which is what Jonathan’s grandfather suggested it was like. Or I could refer to Jonathan’s autism, blindness and prodigious musical talent on the piano, and call it “Savant life”. But I like “Never Ordinary” because of the positive spin it puts on things. “Never Ordinary” is good.